Swollen left ankle and foot

[azaelea]

For a good few weeks now My left ankle and foot is really swollen. No pain anywhere just the right skin feeling when something is swollen. Has anyone else with ET experienced this? It doesn't seem to help elevating it constantly. Another thing they're keeping watch on is a higher liver reading in the last 2 blood tests. Another test due next week. Any other ET patient had a liver problem? I'm on Hydroxy 500mg daily and notice this drug can affect liver enzymes. I'd be interested to hear if anyone else has experienced these things. My platelets are 295 and 301 in last tests. Regards to all. Keep safe, Fran

[Otterfield]

Hi Fran, I had really bad swelling for several months earlier this year. It seemed to move from leg to leg and was sometimes in both. I was admitted to hospital in February as my GP suspected a heart problem. I was diagnosed with venous insufficiency but without seeing a vein specialist. Fast forward to August and my legs started to swell above the knees too. I was also very breathless and once more ended up in hospital for tests on my heart. Heart was fine, then haematology got involved as my Hb and Platelets had dropped and my WBC count had shot up . I had had ET JAK2 for 19 years and it turned out I had progressed to MF. The swelling was somehow connected to the fact that my blood sodium was extremely low. I had to have a saline drip twice (it takes 8 hours!) and then sodium tablets.

I am definitely NOT saying that your ET may have progressed, but sharing my experience to show that it's a good idea to have any swelling checked out. I expect and hope it will turn out to be something simple and fixable. Best wishes, Jennie

[azaelea in reply to Otterfield]

Thank you so much for your reply Jennie.You've certainly had your worrying problems and it helps me to know what can happen with these MPNs. I've been 2 years since diagnosed with ET but I'm 84 so anything could happen. Will contact Haematology after next week's blood test definitely.Best wishes Fran

[hunter5582]

Assuming that there is no acute injury, does this seem like edema or erythromelalgia? Type of swelling/symptoms matter in figuring this out.

Erythromelalgia can be related to ET. From the NHS "People with erythromelalgia typically suffer episodes or "flare-ups" of pain lasting from a few minutes to days. The flare-ups usually start as an itching sensation, which worsens to pain, and tender mottled, red skin that feels warm or hot to the touch. Other symptoms may include: swelling of the affected body part."

Edema - From mayo Clinic "Edema is swelling caused by excess fluid trapped in your body's tissues. Although edema can affect any part of your body, you may notice it more in your hands, arms, feet, ankles and legs.

Edema can be the result of medication, pregnancy or an underlying disease — often congestive heart failure, kidney disease or cirrhosis of the liver.

Swelling of the feet/legs is one of the known side effects of hydroxyurea. It is one of the things that you are supposed to call the doc about if it happens (see Mayo Clinic info below). It can be related to kidney function, so do not ignore it.

There is no way for us to know what exactly is going on, but it definitely merits follow up.

mayoclinic.org/drugs-supple...

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

Please let us know what you find out. All the best to you.

[azaelea in reply to hunter5582]

Thank you very much for your reply and I have read the three links you sent me. I did wonder myself it is a side effect from the Hydroxyurea and notice from the Mayoclinic site it's listed to bring to the Dr's attention which I will certainly do. I'll wait till I have blood test next Wednesday then ring Haematology. My liver enzymes have risen and GP nurse is keeping watch on that. Again I know Hydroxy can highten liver enzymes so will point this out too. I will let you know what transpires. Thanks again for your information which I appreciate as always. Regards, Fran